Lesson From the Freeways: Longtime HIV Survival and the Things Money Can't Replace

By Lynda ArnoldFrom TheBody.com

March 3, 2014

It's been said that you aren't a true Angeleno until you have your first traffic accident on our freeways. Well without having a true competition in our household, the fact remains that I beat my husband in this category by approximately six years. He was just indoctrinated this past week in his own five-car pile-up. Luckily in both our cases no one was seriously injured, but the sight of the ambulances, fire crews, police cars and navigating multiple cars to the side of the freeway in ongoing busy traffic is unnerving itself. Then there's the damage to the vehicles, the insurance claims, the inconvenience of repairs, rental cars and any out-of-pocket expenses. Needless to say it's a hell of a way to become a true Angeleno!

When my husband came home shaken up by the accident, I was in bed trying to rest and our home health aide was busy cleaning our kitchen as she does weekly. I literally was in a dream state when he awoke me. The night before I had had a horrible bout of some type of gastrointestinal flu and was not feeling at all up to par yet and I couldn't really register his words as fast as they were flying out of his mouth. I was just glad that he was OK. I didn't care about the car. I only cared about him and the other drivers. The car can be fixed. If he had been injured or worse yet killed, I realized in that moment that I wasn't sure how I would go on.

We take my illness with a certain type of bravado and confidence. As a long-term HIV survivor, I always figure I have the big things handled. The truth is I don't. Yes we have life insurance on my husband, good enough that I would financially be OK. However, he is my everything -- my partner, my best friend, my driver, my errand runner, my punching bag, my soul mate, my liaison with the kids, etc. and etc. Those are things money can't replace.

As far as having systems in case things don't work out for me -- yes we have my advanced directive; after my husband, my oldest son and then one of my sisters is my agent but I have no life insurance (I sold that policy more than 15 years ago and we spent the money). Now with HIV I can't get a new policy. I settled my lawsuit against the needle manufacturer over 18 years ago and we spent that money too.

We thought I was gonna be dead not alive 21 years later. We used the money to buy our houses, to send our kids to private school, to take nice vacations, to loan friends money when they were in dire straits, etc. Now -- if something happens to me, my husband will barely be able to survive on his teacher's salary and there is nothing left for him to tap into. We have one son about to enter the Marine Corps, one daughter getting ready to head to college and one son in high school. My husband is still paying on his own student loans -- loans we assumed after we had spent all our other money.

Were we stupid? Absolutely! Did we get wrong advice and counsel? Triple yes! Did we have a crystal ball? Nope! Can we blame anyone but ourselves? No! Is it too late to make some financial changes? Yes in most cases it is; although we are trying day by day and step by step.

I know that I as a long-term survivor am not alone in these occurrences. One of the great things about having this blog is that people feel free to email me their thoughts, concerns and ideas. This subject has come up a few times. So it must be pretty common actually. It can be frightening when you look to the future. It's a future we didn't think existed and now it's here right at our feet, awaiting action.

My husband's five-car pile-up brought all of these thoughts, issues, fears, questions and ideas right back at me and literally smacked me in the face as I slowly woke up, shook off the nightmarish dream and realized this was real. He could have been severely injured or worse yet dead. When I could see that about him then it was easier for me to accept that possibility for myself as well. Forget the bravado, lose the uber-confidence and just accept the reality of having AIDS today and focus on staying healthy as best as I am able.

February is a month of challenges for me. My HIV specialist and I are teaming up to try to get consensus on me taking a more aggressive HIV medication regime which is difficult as I am not wholly yet in agreement as I wrestle with the quality vs quantity of life issue for myself. I am trying very hard to stop smoking. This addiction is nearly 25 years in the making and I am kicking butt as I write this but may need some pharmaceutical help such as the patch or gum or maybe even a drug to give me staying power. I am trying to infuse more exercise into my daily routine and have a new walking partner so that we can support each other.

All of these challenges are self driven because the bottom line is I don't like the way I feel particularly with the recurring chest pain and the shortness of breath. I don't like the diagnosis of variant angina and COPD. I don't need them on top of my struggles with HIV as my blood counts are really giving me trouble lately and I am increasingly susceptible to many more infections. That alone is enough coupled with my neurological symptoms. I would like my heart and lungs to just lay low for a while and not give me anymore grief.

However, February is also the month of my husband's birthday and Valentine's Day so there's an additional challenge I have put out to myself to try and remember to be thankful for the little things. My goal is to say thank you and outwardly show my gratitude and respect. I don't want to wait because the truth is no one knows what can happen next to any of us. Maybe by reading this you will embrace your own set of challenges.

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Lynda Arnold, RN, BSN, MBA, was one of the first health care workers to go public after her occupational infection with HIV by an accidental needlestick in 1992. She successfully launched a nationwide campaign for safer needles in hospitals and medical facilities which resulted in the passage of federal legislation mandating the use of such devices in facilities nationwide to protect all health care workers from accidents such as hers. For many years she was a sought-after speaker on living with HIV/AIDS as well as health care worker safety issues, and she traveled the globe educating others. She garnered many awards, national distinctions, authored two children's books, and was the subject of an award-winning documentary. After the birth of her youngest son, Lynda chose to step away from the public eye and focus on raising her young family without the spotlight. As a blogger for TheBody.com, this marks her reentry into the public eye -- 20 years after her infection. She can be reached for further engagements, commentary and questions through her email.

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